Showing 51 - 60 of 521 annotations tagged with the keyword "Disability"

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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Summary:

This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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This Far and No More

Malcolm, Andrew

Last Updated: Sep-12-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  

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Staying Fat for Sarah Byrnes

Crutcher, Chris

Last Updated: Sep-05-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Eric Calhoune is known to his classmates as "Moby" because of the extra weight he has carried since grade school.  Though his mother is young and athletic, he has inherited the body type of the father he's never known.  Now, in high school, the fat is turning to muscle under the discipline of hard swim team workouts.  But that transformation has been slow in coming, since for some time Eric has taken on a private commitment to "stay fat for Sarah Byrnes."  Sarah, whose name is a painful pun, was severely burned as a small child not, as we are given to believe early on, because of an accident, but because of a cruel and crazy father who stuck her face and hands into a woodstove in a moment of rage.  She has lived with him and his threats for some time; that and her disfiguring scars have made her tough, smart, and self-protective.  Eric and she became friends as social outcasts.  Well-matched intellectually and in their subversive wit, they write an underground newspaper together.  Sarah, however, lands suddenly in the hospital, speaking to no one, making eye contact with no one.  Eric faithfully visits her and, per nurses' instructions, keeps up a running one-sided conversation as if she could hear him.  As it turns out, she can.  She is faking catatonia because the hospital is a safe place, and she has chosen this as an escape route from her father.  Eric and a sympathetic coach/teacher go to great lengths to find Sarah's mother-who, it turns out, can't bring herself to be involved in her daughter's life because of her own overwhelming shame.  Ultimately the father is apprehended, and Sarah, nearly eighteen, is taken into the coach's home and adopted for what remains of the childhood she bypassed long before.  In the course of this main plot, other kids enter the story and in various ways come to terms with serious issues in their own lives, some of which are aired in a "Contemporary American Thought" course where no controversy is taboo.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This remarkable memoir/natural history chronicles the author's observation of a snail that occupies the flower pot at her bedside during a long immobilization due to chronic fatigue syndrome.  For months of relative isolation, she observes the habits of the snail and begins to research the lives, habits, species, and idiosyncrasies of snails by way of getting to know this one in greater specificity.  As she puts it, "When the body is rendered useless, the mind still runs like a bloodhound...," (p. 5) and her mind certainly does.  Peering into poetry and story as well as biology, she discovers both facts and lore about the lives of snails to complement her intimate curiosity about the life of this snail.  Along the way, and very much by the way, she reflects on the nature of her own complex illness, the likely brevity of life she has now to expect, and how to learn from another species how to live in time differently. 

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Eye Contact

McGovern, Cammie

Last Updated: Aug-23-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Adam, nine and diagnosed with autism spectrum disorder, wanders into the woods outside his schoolyard with a new friend, Amelia, who is ten and diagnosed with pervasive developmental disorder.  Worried parents and teachers wait until the police discover Amelia's body with a stab wound and retrieve Adam unharmed.  Adam, unable to communicate very directly with anyone, inadvertently provides key clues to solve the mystery, which involves an old friend of his mother's, confined to a wheelchair since an accident he suffered in elementary school.   In the course of recovering from the trauma the whole community is changed, and Adam finds a new friend who will very likely be able to cross bridges into his world and accompany him on his mysterious journey for a long time to come.

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House Rules

Picoult, Jodi

Last Updated: Aug-19-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jacob, a teen with Asperger's syndrome, has long been obsessed with the details of crime scenes and crime detection.  He tends to show up when local crimes are reported, and is sometimes able to offer unnerving insights to forensic analysts.  He works closely with an empathetic, intuitive young woman tutor whose controlling boyfriend has more than once tried to taunt Jacob out of her life, but she and Jacob have a strong, healthy connection that ridicule can't touch.  When she is found murdered, Jacob becomes a suspect, partly because of his proximity to the crime, and partly because the symptoms of Asperger's-avoiding eye contact, twitching, and hesitant or repetitive speech-resemble guilty behavior.  Though he has valuable information to offer as to who actually committed the crime, the process of making himself heard by those disinclined to take him seriously and uninformed about his syndrome, takes time, during which the disrupted lives of those around Jacob, especially his mother, become stories in their own right.

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Nemesis

Roth, Philip

Last Updated: Aug-15-2012
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Bucky Cantor is a young, athletic, Jewish javelin thrower who is acting as a coach for young boys in the sweltering New Jersey summer of 1944. He is ineligible for war service because of his weak eyes.

His coaching efforts are much appreciated by the children and their parents because a polio outbreak is on the rise, and sports help take their minds off their fears of death and permanent illness. One by one, boys fall ill and disappear. Some die. But the games continue in Bucky’s own private campaign against the epidemic.

No one really knows how polio is contracted and spread.

Bucky falls in love with Marcia Steinberg who urges him to leave the city to avoid exposure to the germs. She works at a summer camp in the Poconos far from the city and uses her influence to have him invited to fill a sudden vacancy when the sports instructor is called up to military service. After agonizing over his decision, Bucky accepts the position—admitting that he is running away from fear as much as he is going to Marcia.  He is amazed that no one seems to blame him.

The camp life is idyllic, and he is reconciled to his choice.  But soon one of the boys at camp shows signs of the dreaded illness, and Bucky believes that he must have brought it with him. Then, Bucky himself falls ill and develops a permanent disability that ends his athletic career.

Marcia rushes to his bedside more than willing to continue as his lover and wife, but he sends her away believing that she should not be saddled with a disabled lover. He thinks he did the right thing.

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers ageStephen Greenblatt, Michel Foucault, Judith Butlerthey have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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